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Tuesday, June 9, 2015

When I Wish We Were Chameleons

Sometimes, I forget things.
I forget that Jaycee looks different.
I forget that her riding in a stroller is an odd sight for other children.
I forget that her tongue is out of her mouth most of the time.
I forget that she often makes weird noises.

But, then I'm snapped back into reality and I can no longer forget.

We just took our camper out for the first time last week. We spent months waiting for school to end to have the time to take our first trip. The kids were excited. They each claimed a bed in the camper months ago and were ready to go.

The first trip out went pretty much how you would expect your first trip to be. We were about 6 feet short of reaching the water hook up. I was short two blankets and one set of sheets. Nothing major went wrong thankfully.

My husband happily cooked on the campfire. Jaycee tried s'mores for the first time, which she absolutely loved! Then after dinner, we decided to head to the camp playground. It wasn't a long walk but Jaycee's feet were covered with blisters, so we let her ride in her stroller over to it.

As soon as I wheeled her on the playground, a group of very inquisitive children ranging from 4 to 12 years old approached us.

"Is she hurt? What happened?"

Followed by, "Does she have autism? My brother has autism. He's in special education."

I replied, "No. She has Down syndrome." I had never been asked if she had autism before. That was a new one!

Then the youngest in the group asked, "Why is her tongue hanging out of her mouth?"

"It just does."

"Can she talk?" was his follow up question.

I gave my patent answer, "She can say a few easy words like mama or dada but she mainly signs or uses other ways to communicate. Her mouth just doesn't work right."

"Why not?" asked the boy.

I didn't have the energy to answer him. At this point, I was trying to back away from this nice but talkative bunch and work my way to an empty bench. Finally, they left me alone. They tolerated Jaycee's presence on the playground but the children were discussing her Down syndrome and noises among each other.

Then the strangest comment that I have ever heard from a child's mouth about Jaycee happened: "She can't help it. She has Down syndrome. A lot of people die from that!"

"I'm ready to go," I whispered to my husband.

He told me to relax, to remember that they were just children, and that they were just asking questions. He was right.

But, these are moments when I wish we were chameleons. I just want to blend in with everyone else. I don't want to be noticed. I don't want to be questioned about our family differences.

I wanted to go on our first camping trip just like any other family. I wanted my kid to climb a ladder and go down a slide without stares and comments.

There are places where we are chameleons, however. Jaycee is a chameleon at school where everyone knows her and understands her. At events like Special Olympics or Down syndrome walks, we blend in. At the church we have attended for the past 4 years, we are chameleons even when she's standing in the parking lot screaming. At our local gas station, we are chameleons even as Jaycee races to the juice cooler and back to the counter cutting off anyone who may be standing in line.

I'm thankful for these places where we feel like everyone else. It makes the times when we aren't chameleons much easier!

3 comments:

I totally understand you don't have the energy to keep educating people about Jaycee. I get tired of inquisitive people asking about my disabilities too and sometimes so wish I could just blend in with the crowd. You did a good job answering the boy's questions. It'sunderstandable tha the wanted to know more, but some things just aren't everyone's business and/or are too complicated to explain. Via Love that Max.

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